Thanks for taking the time to visit my JustGiving page. This page has replaced the VirginMoneyGiving page. All donations from that page have been sent to CMT.

I had never heard of Charcot-Marie-Tooth disease (CMT) until speaking with a friend, Paul Geary, and finding out his son was in the process of being diagnosed. CMT is known as a hereditary motor and sensory neuropathy – I had to check the spelling of that twice. To the non white coat sporting and stethoscope yielding amongst us, this means that there will be signal issues from the muscles via touch to the central nervous system - the brain and spinal cord. This causes muscle weakness in the feet, ankles, legs and hands. Please take the time to click on the link below to view the official video from CMT to learn more.

http://cmt.org.uk/video

If you had never heard of CMT, like me, you’re not alone. It is in fact the most common neuropathy you’ve never heard of. And that is the point of this page and me taking on this challenge. To raise awareness, and a little money to help support the great work carried out by Charcot-Marie-Tooth UK.

In the lead up to signing up for this event, I had just finished my favourite past time, whinging, to (or was it at) Paul about one thing or another whilst on a run (more of a fat boy plod than a run, but run sounds better). It was around about this time he told me about his family going through the diagnoses together. If he was trying to put things into perspective for me, it worked. There are several reasons why people might struggle to maintain fitness and keep active, but there was nothing preventing me. I wanted to help Paul raise awareness and decided to put the donut down and get off the couch (queue the Rocky soundtrack). I started looking for an event to motivate me, 5K turned to 10K then a marathon. Before I knew it, I had convinced myself that I could do an Ironman!? With debit card in hand, application form complete, “send.” Roll forward a few months and here I am hoping that I can doggy paddle for 2.4 miles, cycle 112 miles (are electric bikes frowned upon) and run fat boy run to the end of a marathon.

Paul and his wife Nicki have put together a few words to help us understand the experience their son Zach has been through and the affects a neuropathy condition has on daily tasks:

Our son Zach is 12 and up to a couple of years ago was able to join in sports and play with friends at parks. Zach began to fall regularly and found standing harder to do without assistance, he was then diagnosed with a hereditary neuropathy of the peripheral nerves which is a progressive disorder meaning his nerves are breaking down. Zach is now using a wheelchair full time, fatigue and pain can be so severe he needs help with all aspects of day to day life. The cause is unknown and the future is daunting as there is no current treatment. With support from family and friends Zach remains positive and lives with hope for the future.